KCNT1 Epilepsy Foundation corporate and Allied Partners Policy
The KCNT1 Epilepsy Foundation engages a wide network of partners—including industry, researchers, clinicians, hospitals, and patient organizations—to accelerate progress toward treatments for KCNT1-related epilepsies.
We believe meaningful progress happens when families, scientists, and partners work together. At the same time, we are committed to maintaining independence, scientific integrity, and the trust of the community we serve.
How We Work with Partners
Mission First
Every partnership must support our mission: advancing research, supporting families, and accelerating development of effective treatments for KCNT1-related epilepsies.
Built for Collaboration
We actively collaborate with partners to move the field forward. This includes:
- Identifying gaps and barriers in research
- Supporting development of critical research assets and infrastructure
- Helping enable investment and clinical readiness
As part of this work, we may share updates, progress reports, and insights to promote alignment and accelerate progress.
Independence Matters
While we collaborate closely, the KCNT1 Epilepsy Foundation maintains independence in how decisions are made.
Partners do not control:
- Final funding decisions
- Research supported by the Foundation
- Educational content or communications
- Selection of researchers, investigators, or speakers
All decisions are made based on scientific merit, community need, and mission impact.
Commitment to Scientific Integrity
We are committed to rigorous, evidence-based research. We do not enter into relationships that could compromise—or appear to compromise—the integrity or objectivity of our work.
No Endorsements
We do not endorse specific companies, therapies, or products.
Our role is to help advance the field and represent the needs of the KCNT1 community—not to promote individual solutions.
Transparency and Trust
We believe trust is earned through transparency and accountability.
We:
- Conduct due diligence on partners
- Use funds in alignment with our mission
- Share information about partnerships in accordance with nonprofit best practices
Clear Agreements
Formal partnerships are guided by written agreements that define:
- The purpose of the collaboration
- How support will be used
- The Foundation’s independence and control over its work
Collaboration Across the Ecosystem
We engage across the full KCNT1 ecosystem—including industry, academia, clinicians, and patient groups—to ensure progress is coordinated, informed by real-world need, and moving as quickly as possible.
Participation in research efforts, collaborations, or regulatory discussions is grounded in representing the KCNT1 community and advancing the field. It does not constitute endorsement of any specific therapy or product.
Financial Return and Revenue-Sharing Arrangements
The Foundation may participate in mission-aligned arrangements that include revenue sharing, cost recovery, licensing, or other financial-return provisions, including through biobank partnerships, data partnerships, research collaborations, or potential spinout-related agreements. Any such arrangement must support the Foundation’s charitable mission, be reviewed for independence and conflicts of interest, and be structured to protect the interests of the KCNT1 community. Financial-return provisions do not affect our research priorities, educational content, funding decisions, or whether we endorse any company, therapy, or product.
Our Responsibility
We reserve the right to decline or end any partnership that does not align with our mission, values, or responsibility to the community we serve.
Approved by the Board of Directors on June 25, 2026
